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Before mailing a saliva sample or uploading genetic results, check what the testing company collects, who can receive it, how long it keeps each copy, and what deletion actually removes. Treat DNA results as sensitive identifying information; a privacy policy or security promise alone cannot tell you exactly how your data will be handled.

What data can an at-home test involve?

A consumer genetic test may start with a saliva sample and produce ancestry information or estimates about health conditions. The information trail can extend beyond the sample and report: an account may also include your name, contact details, family or health information, payment records, and app data. Ask the provider to identify the data it collects at each stage, including information held by its laboratory and contractors.

What should you check before sending a sample?

Read the current privacy policy, consent screens, and research terms before ordering or activating a kit. Look for specific answers to these questions:

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  • Access and sharing: Which laboratories, contractors, researchers, commercial partners, or other entities can receive data, and for what purposes?
  • Research consent: Is participation optional and separately consented to, or bundled with other terms? Can you withdraw consent, and what happens to information already used or distributed?
  • Retention: How long does the company keep the physical sample, raw genetic data, interpreted reports, account information, and backups?
  • Policy changes: Can the company change sharing or other terms for information it already collected? How will it notify customers?
  • Account controls: Does the service offer multifactor authentication and ways to manage access, export data, or request deletion?

Do not infer that a feature exists because it would be useful; confirm it in the provider’s current terms or account settings. A useful starting question is, “Who will have access to my data, and for what purpose?” The FTC’s consumer guidance also recommends considering how genetic-testing companies collect and use personal information: FTC: What to Know About Direct-to-Consumer Genetic Tests.

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What does deletion mean in practice?

“Delete my data” can refer to different things. Before testing, find the procedure for closing an account and requesting deletion, then ask which copies are included and what exceptions apply. Specifically check whether the request covers:

  • Your account and identifying details.
  • Interpreted reports and raw genetic data.
  • Data held by laboratories or other service providers.
  • Backups and records the company may retain for legal or operational reasons.
  • The physical sample, including how and when the lab destroys it.

Ask whether deletion is confirmed and whether information already shared, used in research, or incorporated into another dataset can be retrieved or removed. The company’s terms should explain any limits; do not assume deleting an app or closing an account destroys every copy or the specimen.

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Why check whether HIPAA applies?

Do not assume a direct-to-consumer testing service is covered by HIPAA. The U.S. Department of Health and Human Services says, “Yes, genetic information is health information protected by the Privacy Rule,” but HIPAA protection depends on the information being individually identifiable and maintained by a covered health care provider, health plan, or health care clearinghouse. The fact that data concerns health or genetics does not, by itself, establish that HIPAA applies to the company holding it. See HHS: Does the HIPAA Privacy Rule protect genetic information?.

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Ask what protections apply to the testing company’s own records, and distinguish those from records held by a healthcare provider or health plan. The FTC says its Act requires companies to honor express or implied privacy promises and maintain security appropriate to the nature of the data. The Health Breach Notification Rule may apply to some businesses, but that does not establish that it applies to every genetic-testing provider. See FTC: Complying with the Health Breach Notification Rule.

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What protection does GINA provide—and what does it not cover?

The FTC’s consumer guidance describes protections under the Genetic Information Nondiscrimination Act (GINA) concerning genetic-information discrimination in employment and health insurance. It also notes an important limit: GINA does not apply to disability or long-term-care insurance. Do not treat GINA as a blanket guarantee against every possible use of genetic information by insurers or employers. The cited guidance does not establish every state-specific or policy-specific rule; consult current official guidance for your circumstances. FTC consumer guidance on direct-to-consumer genetic tests.

How can you reduce account and data exposure?

Protect the online account as well as the sample. FTC enforcement actions have documented genetic-data security failures, but a past case does not establish the controls used by any other provider. Check the current provider-specific terms and settings, then use practical safeguards:

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  • Use a unique, strong password for the testing account.
  • Turn on multifactor authentication if the service offers it.
  • Secure the email account used for sign-in and recovery with a unique password and multifactor authentication where available.
  • Avoid downloading or sharing raw genetic files unless you have a clear reason and understand where each copy will go.
  • Review account access and sharing choices periodically, especially after a policy or service change.
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What the FTC’s 1Health/Vitagene case illustrates

In June 2023, the Federal Trade Commission announced allegations that 1Health.io, formerly Vitagene, left sensitive genetic and health information unsecured, misrepresented its deletion and security practices, and expanded categories of third-party sharing through a policy change without adequate notice or consent. According to the FTC’s complaint, nearly 2,400 health reports and raw genetic data for at least 227 consumers were stored in publicly accessible cloud storage. These were FTC allegations, not a finding that every testing company acts similarly.

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The FTC also described proposed settlement terms that included obtaining affirmative express consent before sharing health data with third parties and instructing contract laboratories to destroy samples retained longer than 180 days. Those proposed terms concern that enforcement matter; they are not a general retention rule for other providers. The case is a reason to read deletion, sharing, and policy-change terms closely, not proof that a particular provider has the same practices. See the FTC’s 1Health/Vitagene announcement.

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